Electronic Medical Records

Ezra Klein, a columnist in the Washington Post who focuses on United States health policy, recently wrote a post about electronic medical records, arguing that it is absurd that we have not yet adopted their use:

The fact that it’s 2010 and we’re having a conversation about how to move records from paper to computers is evidence of how screwed up the American health-care system is. In part, you’re dealing with the fractured incentives in the system: It’s good for patients and good for insurers if doctor’s offices spend money setting up computer systems, but it’s not necessarily going to make doctors any money, and the doctors themselves are frequently older and don’t want to learn a new system. That’s one reason why systems where the insurer and the provider are the same — think Veteran’s Affairs or Kaiser Permanente — tend to be ahead of the curve on electronic medical records.

But even if the economic analysis makes you sympathetic, the end result is still absurd. Imagine walking into a bank where clerks scrawled all your information in a giant ledger book. You’d run out and tweet all your friends about this hilarious bank from the 18th century. But we actually let people do this with our medical records, and then some of us die or have serious problems because our records get lost or our doctor’s handwriting is illegible.

I have a few different perspectives on medical records. First, I’ve generated a significant number of my own records and have been annoyed and frustrated many times by the lack of coordination in the care I’ve received and the seemingly endless need to provide the same information over and over again. It does seem anachronistic to me to rely almost entirely on handwritten documents to track care.

For another perspective, I often gather, review and interpret the records of others to support their applications for disability benefits. Benefits programs have definitions of “disability” that require complicated analysis and review of a person’s entire medical record to pick out enough information to decide if they meet whatever the disability standard is for that program. And for the low-income folks I work with, who have choppy and intermittent access to health care that is usually spread out among a staggering number of disconnected health care providers, the task of coercing and cajoling the various doctors and medical facilities to copy the handwritten notes in a medical file is often overwhelming and sometimes Sisyphean.

If people get past the initial barrier of gathering the records, there is often an issue of actually figuring out what the damn things say. I know it’s cliche to joke about doctor’s handwriting, but in my experience, those jokes are founded in page after page after page of incomprehensible scrawl with a seemingly infinite series of baffling abbreviations and large sections that we sometimes cannot decipher even after 6 of us (including a doctor and a nurse!) spend an hour trying to make it out. I create my own indexes and chronologies and piece together when each medication started and stopped and when a diagnosis was made.

Sometimes, our clients have gotten medical services through the Veteran’s Administration (VA). The VA mails me a CD-ROM that loads the entire medical file in chronological order in typed PDF format, entirely searchable. (With the proper HIPAA-compliant releases, of course, you can’t just get people’s records from the VA.) Periodically, around every 6 months, the system automatically generates a list of medications and diagnoses in the records. The CD has the medical imaging on it, so I can get one of my experts to look at it. It is such a big difference that we sometimes squabble over the cases with VA records because they’re so much easier to deal with.

On the other hand, there are obvious and significant privacy concerns. I do not want it to be easy for an employer, law enforcement, insurance companies, or really any person or entity to whom I haven’t given direct and explicit permission, to get hold of my medical records or to be able to send them in an email in the blink of an eye. And given the existing level of ableism and discrimination, that is certainly an issue with life and death consequences for some people with disabilities. I do not know whether it’s possible to safeguard medical information to the necessary level while still allowing the accessibility and coordination that make electronic medical records so appealing.

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8 thoughts on “Electronic Medical Records”

I think that there are probably electronic safeguards that could be used to safeguard information, the inability to open files without a USB dongle that generates a new password every X seconds or the like, the sort of thing that’s used now for electronic data in circumstances of high security. Of course, before the medical establishment gets serious about that level of security, they’ll have to recognize that their own big mouths are the biggest violations of HIPAA to start with and work from there. (Anyone who’s been to a doctor’s office with thin walls and/or a high number of elderly patients or anyone who’s been in a busy hospital lately knows what I mean.)

In the Netherlands, there is talk about a national electornic medical record-keeping system, whereby every doctor you give consent to, gets access to your entire record. I opted out of this, and it’s not because I don’t like electronic records. In fact, I’m very glad that my current institution keeps its records on the computer. However, the reason I opted out is that I do not want a doctor to see all of my records when only part of them is relevant. For example, if I ever need to see an ophthalmologist again for my eye condition (unlikely, but let’s assume), I would want that doctor to know the details of my eye condition, but my 2 1/2 year history as a psychiatric inpatient is none of their business.

In the UK, the we already use an electronic system for many medical records, which means that any NHS practitioner involved in your care should be able to access certain kinds of records. They can’t access everything, but they can access clinical tests (eg blood tests or x-rays). Each practitioner also keeps separate records — so the GP keeps their notes from appointments, and those aren’t accessible to, say, a physiotherapist. So if you go to a GUM clinic, your GP isn’t notified unless you want them to be.

There are plans to have a central database for all medical records, contact details, and demographic information, that would be accessible to more medical professionals — it’s called Spine, and it’s not running in Scotland currently, and has encountered a number of practical and privacy-related problems in England. Not sure about Wales. Spine would end confidential visits to GUM clinics (among other things).

In England, there’s also a plan to unify certain kinds of records for children into a database called ContactPoint. It would contain contact details for the child’s GP, school, health visitor, and other service providers (eg, social workers). It’s supposed to unify these services more, so that children who are considered “at risk” (that’s legal terminology, it means kids that social services have been alerted to) can have more unified attention given to them. But obviously it’s also a huge privacy risk. I don’t think we have it in Scotland at the moment, but I’m not sure about Wales.

The hospital system where my doctors are uses EMR. I find it really helpful because I’ve got a complex condition that sends me to a lot of specialists. Sometimes knowing what other specialists are seeing or doing can help the one I’m seeing at that moment with treatment options.

The biggest benefit, though, is that my GP can see all of the specialist reports. Having the person coordinating your care aware of what all the specialists are doing is absolutely priceless.

I do like that I get my psych health somewhere else, so even though they use EMR there, my physical doctors don’t have access to that unless I explicitly bring it to them. That division is, to my mind, a good thing – my psychiatrist and my psychologist can communicate, and all of my physical doctors can communicate, but the only interaction between the two systems is occasional phone calls from doctors to make sure that my emotional disorders aren’t likely to be the root cause of any physical issues.

As a disabled health care provider as well as patient, I’m a huge fan of EMRs for several reasons. One is that they nicely accommodate my disability. There are patient charts which are too heavy for me to lift! On a more serious note, I have to type rather than handwrite my notes. At one institution it took me weeks to get permission to type, and than I had to use a certain computer, put special paper into a specific printer and so forth. With our current EMR, I can chart from any computer or even from home . The patient’s lab tests and vital signs are already in the system wherever I happen to be. I am not dependent on a phone call or a physical trip to the hospital floor to see that a medication I suggested has been started, or that the medication isn’t working.

EMRs are good for patient safety as well. I get frustrated as a patient when I have to relate my history and medications to multiple providers over and over, but at least I am able to give accurate infromation. It is difficult for some of my patients or families to remember the names of multiple medications, specialists, dates of past surgeries, and it shouldn’t be dropped onto the patient or family to keep track of all of that, especially at a stressful time. When I see a patient in clinic, I can read the hospital discharge note and other clinic notes, see what medications were prescribed and go into the visit much better prepared. There is less of a risk of prescribing a medication that has already been tried or repeating a test which was just done last week.

And yes, there is risk of reduction of patient privacy, although I agree the biggest risk is still word of mouth. The solution I envision would be a password protected system. EMTs would get a list of medication allergies and life threatening conditions such as diabetes. Medical doctors would get medical history and information. Only the treating psychiatrist or counselor would have a password which gave access to psychotherapy notes. The person who does the billing would get only diagnosis codes, not clinic notes. This technology would not be hard to implement since everything is already password protected – just give different passwords the appropriate level of access.

I really like Nightengale’s clear layout of access levels. It makes an infinite amount of sense to me. Yes, there are concerns about privacy, but I honestly think the current system is much less private than we would like to believe.

My last GP’s office had EMR, but they were not shared outside of the office. This made it easy when I needed a quick appointment and couldn’t see my regular GP, but got in with someone else in his practice, but because they were not shared, I had to repeat all the same information to my neuro, outside of the practice. I would love to have what meds I’ve tried and haven’t worked and their dosages and all of my side effects listed for me ahead of time–I sometimes don’t have the spoons to remember (or write down) myself.

My last job, as I’ve mentioned a few times, was working in a psych hospital for kids and teens. We all had clearance to view the charts, and these contained some intensely private information–therapy notes, medical histories, histories gathered by the psychiatrists and social workers, notes given by outside providers, which often included detailed psychiatric testing scores and graphic abuse accounts. We signed a form at the beginning of employment promising not to violate HIPAA, and no further training. My coworkers would read the charts, laugh at them, discuss them loudly where other patients could hear. They would claim kids were evil, or deserved to be raped, or were “retarded.” It was necessary for some to have charting access, as we were required to chart some things daily, but I feel there should have been clearly designated boundaries as far as what parts were accessible and what were not. An EMR system might have helped here: regular staff could have limited access to the daily progress portion (which was where we charted) and current diagnosis/precautions. Nursing could have access to this, plus medical information. Social work and therapists could access the whole chart, as could medical records techs who would do the day to day scanning/uploading/filing necessary to keep charts on working computers.

Kali –
“The biggest benefit, though, is that my GP can see all of the specialist reports. Having the person coordinating your care aware of what all the specialists are doing is absolutely priceless.”

Wordy McWord, Kali! I love my GP (and the clinic itself) and there are so many forms to sign each time… I get blood drawn at my PCM and then I want so-and-so to have the results. I wish there was a system where I could say, okay, I want my PCM, Dr Ego, and Dr Awesome to have access to everything, due to the medications and my medical history.

But it’s also great in offices – even if there’s so sharing. Dr Awesome carries a laptop with him now (he didn’t when I was in the throes of a thyroid problem) and they fax the prescriptions to my pharmacy!

At my PCM, I have a brick.

Dr Ego needs to have electronic records. He has a new sheet, and only that sheet, for the visit. So I told him today I needed a refill on a medication I’ve been on for a while, no problems, etc etc. He gave it to me at the wrong dosage, because I didn’t mention it. This is not the first time. Irony – he prints the prescriptions off his office desktop computer. Also, he said “see me in two weeks” – in two weeks, he’s out of the office. *headdesk*

I also totally agree with Nightengale – I’m sorry, I can’t remember every little surgery or procedure I’ve had! (Like with SSI – in the last how many years? Can I just sign a release for my doctors?) I keep a sheet of paper with me with all my meds and my medical allergies, but I have to remember to update it. It’s easy with medication – the bottles are right there! But surgeries and procedures? And how many cat scans have I had? What?

Why won’t they communicate?! is our frustrated cry again and again.

The pharmacy is the best thought – they know my allergies, and wanted to clear a green pill because the yellow dye was similar to something I’m allergic to. I think the system national (USA) pharmacies have is awesome. (My experience is with Walgreens, though I’ve also found that any pharmacy – even across the country – will refill any med that has refills because they can contact the original pharmacy.) Today, Walgreens sent over a prescription (not controlled, not a pain med) to another location closer to home since they didn’t have it. And I can walk into any in the country and they’ll know everything. I like that, and a similar thing – maybe done through our insurance? – would be amazing.

I realized, I forgot to mention the one frustration I have with the system – the ER doesn’t have any access to the rest of the hospital system! The ER can’t see the past times I’ve been in without deliberately going looking for it (which they’ve done once, when they thought I might be some kind of problem patient, only to discover that while I’ve been there a lot, it’s been for a lot of different things). The ER can’t see what any of my other doctors are doing. The ER can’t see my medical history. When I go to the ER, I actually carry a printout of an article describing my primary diagnosis because most of them don’t know what it is, especially the nurses. And often the doctors remember a few tidbits but not important things like local anesthetics don’t work well and joints dislocate extremely easily. It’d be oh-so-very-nice if they could access my very long list of medications and allergies, because I’ve come in sick to the point of being fairly nonverbal before and had to have my boyfriend explain things. If he’d been out of town, I’d’ve been in trouble. And man would I love it if they had a record somewhere that I almost always feel better after getting fluids, no matter what’s wrong but especially if I’ve come in with some kind of GI symptoms.